Is there a hysterectomy support thread?

[ALemonyPea]

I had a laparoscopic vaginal hysterectomy, retained ovaries but everything else removed.

Day 6 for me, and I have some questions and would like some support as freacking out about the thought of vault prolapse.

I am managing pain wise now. Some slight pulling on one side, but manageable. Belly button keeps bleeding, but not enough to run out, so just cleaning it twice a day.

I feel quite heavy down there, is that normal?

I thought I had read everything there was about hysterectomies before I had the op, but the surgeon mentioned vaginal vault prolapse just before the surgery and explained it briefly. I then googled, and the first page brought up an awful image and I can't get it out my mind. I'm terrified that it'll happen to me.

Can anyone offer any help and support.

I have made a tactical error in the wardrobe area. I thought it would be warmer by now, so the clothes I bought were all very lightweight harem type trousers - think cotton pj look. Everything else I own is too tight around my now giant tummy. I look like a bag lady with thick jumpers over the top, It's a bit embarrassing going out for walks.

😀robots I have no shame, I was strolling on Wandsworth Common ( as usual awash with hugely affluent yummy mummies, daddies and kids).. in wrinkly grey paint splashed leggings, thick woolly cardigan, lurid socks and totally inappropriate but comfortable footwear. Even their designer puppies were better dressed than me. I just didnt have the energy to be mortified. and in honesty would have been hard pushed to look any better without surgery as an excuse
Its hot here today, so wishing I had your lightweight harems!

Just popping in to say hello and wishing everyone health.

How are you all feeling?

I'm feeling meh - I've been bleeding on and off, the Northisterone just isn't working so I'm trying to be very consistent with taking them (I do forget when I'm busy at work sometimes) also got bloomin awful cramping

But...I forced myself to go to a spin class and feel so much better.

Gig, I was exactly the same with being exhausted one day, ok the next.

Robots, I was 6/7 weeks in before I felt comfortable wearing anything other than leggings.

BG, sorry you're having a hard time, hoping your op comes around soon.

I'm sorry you are feeling so rubbish BG, that can't be fun :(

By this time of day I'm absolutely wiped out, but I feel much better today than I have done so far. A lot less discomfort. I might need to talk to my gp about how symptoms get worse after eating. I'm still on little little meals. But I got the hospital report back and it turns out I also had bowel adhesions which they had to unstick, so maybe it's that?

I start back at very part time work next week. I work from home. Dreading it in some ways as I'd just started to enjoy being off and not doing very much. It seems a bit crazy to go back 2 1/2 weeks post op, but it doesn't take any extra physical effort than I'm doing now.

Sorry you're not feeling so good BG. You're really suffering, aren't you?

I was away at the weekend and was fine until Sunday when my pains kicked in.

Good luck starting back work, Robots x

Back to work Robots? That's quick isn't it? I am probably a terrible employee and won't be rushing back to work.
BG2015, hopefully you are feeling better today.
Lemony I think that I am going to be like you regarding leggings!
I definitely see the pattern of one good one not so good day, I find concentration a problem still.
I am struggling to come to terms with needing a HRT patch, I didn't even think about it before the operation for some reason.
Hope everyone is well and improving after your operation?

Hope the return to work goes well, Robots. I was off for seven weeks so it sounds like you're doing really well.

BG - hope you're feeling a bit better today.

I had the good day/not so good day pattern for several weeks, it does seem to be a thing with hysterectomies.

It's probably foolhardy of me, but I'm self employed and if Im not working, Im not earning. I can't talk about the nature of my work, but some of it has very tight time constraints too and those aspects could do with me getting on with them.
I'd much rather take the time to recover properly. But I'll remain on reduced hours for another few weeks.

Hyster, it's taking me a while to get my head around it too. Having to rely on another medication for well being and good health and wondering if it will keep working well. I think it takes some adjustment.

Reduced hours are a good way to go. I started back on four hours a day and increased by an hour a week until I was back to full time. The only problem was, it gave me a taste for working part-time - only working 4 or 5 hours a day was lovely! After the first day back, I was shattered but the second day was much better.

I'm feeling much better thank you. The bleeding has stopped.

Still no letter though from the hospital

BG you can phone the hospital appt line and ask if there are any upcoming appointments on the system. Sometimes they can be a couple of weeks ahead of letters.

Robots as the end of May looms closer I'm happy to wait - we go to London to see Harry Potter on the 27th May so anytime after then will be fine.

I reckon I will have my operation on the very last week of the 18 week wait which will be the last week of June.

Morning everyone!
Just checking in. Hope you're all ok today?
I'm feeling surprisingly well. Went out for coffee with a friend yesterday. Did feel quite sore later in the day and had to resort to holding my tummy.
The cleaner came for the first time.. weird, but lovely!
Have a good day 🙂

Morning greyboot and thank you for asking. It is the end of Week 3 for me and had a few down days and have been a bit breathless, but much more chipper today.

Re the breathlessness thing, I did lose a lot of blood during the op so thinking my haemoglobin might still be low so will monitor and get bloods done if still concerned. Noticeable reduction in the abdominal swelling now, hurrah.

Evenings are still the most uncomfortable, thank goodness for Great British Menu, Masterchef and bed 😀

I am still waiting for the path report so phoned and checked. Apparently it is not sent but discussed at the follow up, but due to their workload thats not until August . They couldnt disclose over the phone but have now agreed to post the results given the long wait. I am assuming if there was anything bad there would have been a greater sense of urgency but will be good to see in writing.
Plus I am still obsessed with the fibroids and want to know if one really did weigh over 1.5kg

Glad you are feeling good, and do enjoy the cleaner. And do not be disheartened by another spell of fatigue, this up/down is definitely A Thing.

Onward and upward everyone!

Gig... glad to hear you're mostly on the up now!
I'm intrigued as to how much my fibroids weighed, I wonder if they can tell me at my follow up check?
All I currently know is my uterus was 20 week size, but no further fibroid information.
I did realise earlier that I can actually properly wee again.. I had got to the point, pre surgery, of feeling like I had at the end of pregnancy with the bladder pressure!

greyboot I have a pic of mine and happy to share 😀😀😀😀😀
I was joking with the consultant and SR about the weight before and we had a small sweepstake going on, so they were equally frustrated that it hadn't been weighed and had been taken away. It is not clever to let these things get too big, mine was quoted at 9cm/20 weeks from the original scan last year which I think is the same as you. But either it grew mahoosively or was underestimated.

Like you, my bladder (and more so my bowel) were under pressure and are definitely appreciating the new space.

I will let you know if the path report mentions weight, which is the info the consultant will have at follow up.

I do feel a bit like Sigourney Weaver in Alien and am glad to be rid.

Apologies to anyone reading this post if this is TMI but that bastard fibroid had a significant impact on my quality of life and if you are in a similar situation don't put up with it and absolutely do not put off sorting it out!

Glad to hear everyone is doing so well!

Totally second what Gig says - my IBS has all but disappeared now my bowel no longer has an ovary stuck to it and fibroids squashing everything together. I can't believe I put up with it all for so long! I really wish I had been more assertive, but it wasn't till I ended up in A&E that anyone took me seriously.

Grey, good to hear you were able to go out. I hope the good weather continues so that all of you who are recovering can sit outside in the sunshine!

Gig, I'd love to see a pic!
I had a scan in July last year that measured mine at approximately 8cm and a smaller one of 6.5.
Consultant put me on esmya in Nov to try to shrink them pre surgery and control bleeding, but scan in Feb showed little change.
I've been on movicol since last summer because of bowel pressure and although I'm still taking it post op, I'm back to my pre fibroid regularity atm, so very relieved (literally!) about that 🙂

Really happy to hear the positive ibs stories as mine certainly seems to be getting worst. I'm having a total hysterectomy on Monday, I will hopefully be keeping my ovaries as I'm only 38 but the surgeon will make a decision on the day as I've got pcos and a history of ovarian cysts. Any top tips for recovery would be welcome....

grey i tried to pm you but you cannot attach a pic. Would it be bad form to post it here do you think? I am from a medical family and as a consequence have a fairly high gross-out point but am trying to be sensitive and dont want to offend anyone. Its nothing you cant find by googling, obviously.

mylittlepeanut all the best for Monday.
I was passed from gynae to GI, from laparoscopy to colonoscopy for years trying to get to root cause of my A&E admission level pelvic pain and routine bowel difficulties, with endo, ovarian cysts and fibroids identified as the smoking gun. The hysterectomy has removed the main suspects and although I am still early post-op the change and regularity in my bowel behaviour is already remarkable. Happy days. I wish the same for you!
Top tip for recovery (that I picked up here) is peppermint tea to reduce wind and constipation. Earplugs/ipod to cut out noise if you are in a ward will make stay more bearable. Doing what you are told i.e. Very Little, is a must too 😀. Importantly everyone's surgery is different and recovery time is not a competition so listen to your body and take each day as it comes.

Hi, mylittlepeanut - best wishes for your op!

My recovery tips are, in addition to what Gig said - take a pillow with you for the trip home from the hospital, to put between yourself and your seatbelt; take loose clothing with you; make yourself a recovery 'nest' in your house with things like books, computer, remote controls etc. all within arm's reach; make sure you have enough pillows on your bed to sleep propped up if you need to; don't feel you have to force yourself to poo before you're ready and finally, you might not have much appetite at first so stock up on light, easy-to-eat foods. Gig has already covered by far the most important one of letting your body guide you and not comparing yourself to others.

I hope it goes well Peanut :)

Take in little cartons of juice, Easy to drink when lying down.
Spare battery pack for your phone.
Definitely earplugs!.
Vitamin c for tissue repair.
Free trial of netflix if you don't have it. You can cancel the same day but get your whole months worth of trial.

My lower bowels get ridiculously sore before and during needing to go. I think it's from the adhesions? But the top half of them is behaving nicely.

The hrt side is fine, no symptoms :) Sleeping is amazing, though I did get chased by human size spitting puffer fish last night AND got told off for disturbing the fish.

I over did things yesterday, so today was a netflix day.